A family's story

Posts tagged ‘Autism’

Somehow, and I’m not exactly sure how we have gotten “here”, Tate is finishing up fifth grade, and we are prepping for middle school. Sixth grade. We are trying to determine how to make middle school successful for him.

We had our IEP meeting. We discussed his strengths. We discussed the challenges he faces. We agreed that his placement is the best option at this point in our district. While I understand the placement, I’d be remiss if I didn’t state that I worry that he won’t be challenged academically. He is more intelligent than those standardized tests indicate, that’s for sure. When he gets bored his “maladaptive” behaviors begin…he’s good about communicating non-verbally when the situation isn’t right. I will be monitoring the situation very closely next year, not hesitating to call meetings as needed to keep him on track.

Currently I’m frustrated that it took 6 months for the district to allow our BCBA to come observe the classroom and give some feedback as to what might help Tate. It is also exasperating that no one truly seems to understand that autistics have sensory needs that need to be anticipated and intervention needs to happen prior to a meltdown, not as a reactionary solution after the behavior occurs.

The hard truth is that there really isn’t any program in our district that is a great fit for Tate. We know that the general education setting, even with a 1:1 aide would be too difficult. The instructional program pulls back on adult support, and Tate requires many adult prompts to stay on task and to function in the classroom. Hence, he will be in a restrictive classroom of kids in grades 6-8 who require significant adult intervention. It also has a life-skills slant to it.

I visited the classroom where he’ll be in the fall. The observation itself went smoothly. The teacher is vibrant. She’s respectful. She has fun with her students. Most importantly, she treated each student as a PERSON. Even in my brief observation, it was obvious that the students each bring their own set of learning issues to the classroom. She was able to differentiate her approach towards the students. I was keenly aware of the respect she showed her students. She wanted to be there with them.

Unlike a fitting room with a new pair of jeans, I can’t try each one on for size and comfort. This is somewhat like a stitch fix order. We are making an educated guess at the fit, and when it comes down to it, we hope it fits like a glove..or maybe will work with slight tailoring. Fingers crossed.

Upside to this is that nothing is ever permanent. We can always call another meeting…but in the meantime, I hope I’m not lopping off a huge chunk of length for him that causes Tate to be confined to something that won’t work well in the long run.

Ah, the challenge of parenthood….always wondering if the decision is the best one.

Last week Tate’s 5th grade class participated in their outdoor education field trip. It’s a 3-day, 2-night trip to a state park. While the students are there, they are learning teamwork, independence, resilience and accountability. I love that our district provides this opportunity for its students at this age. 10/11 year olds are so much more capable of this type of work than we give them credit for.

I was incredibly uneasy about how Tate would handle the rigors of the trip. The teachers do a phenomenal job preparing the students for the trip. They discuss manners, practice family-style lunch, view videos and learn about the schedules of their day. The trip is highly structured, but it is also in a foreign environment, has “outside” instructors, and they are out in the elements. We talked about the trip at home, too. I knew he was prepared, but yet, it was so NEW and DIFFERENT. Those two things, alone, can be a minefield for my kid.

After discussions with his team and other parents, Hubz and I decided that I’d go down to the area where the trip was taking place and stay with Tate overnight in a hotel. We cut his trip to 2 days and 1 night. He DID get to take the bus with his peers, and he participated in almost all of the activities each day he was there.

Tate handled the trip quite well. Yes, he had anxiety. Yes, he didn’t sleep for 3 nights prior to the trip. But, he did it. I’m grateful that the team allowed flexibility, because Tate did sleep quite well in the hotel, and I know if he had been in the group dorms, it would not have gone so well.

One of the activities that the students do is to do birdwatching. Tate is a natural. His keen eye and ability to see the thing that is out of place in a background lent itself well to this endeavor. In fact, he enjoyed it so much and did such a great job explaining the birds to his peers that his team decided to have him do birdwatching both days, and it was great! He also really enjoyed building a shelter out of branches, leaves and twigs. The heavy work was perfect OT for him.

Each day that I picked Tate up from the event, his teacher told me that he handled it well and reported a few struggles, but nothing out of the ordinary and nothing that couldn’t be redirected. Also, Tate LOVED doing the table prep and bussing (they called it hopping). He was a pro, and even did a phenomenal job rinsing dishes in the kitchen.

To some, that might not seem like a big deal, but to anyone who has kids with differing abilities and neurodiversity, well, it was celebration time! If he can bus tables successfully at age 10, then what’s to say he can’t do that as an older teen? If he can follow “job” requirements and rules as a 5th grader, what’s to say he won’t be able to do that at age 18?

When we pulled out of the parking lot and headed home on his last day with his class, he thanked me for taking him. I thanked him for being a good sport. Then he told me to relax and turn the radio up. Adele was on and I was talking too much. My kiddo was brave. He was adventurous. He ate freaking turkey and mashed potatoes for dinner! The sky is the limit, my friends.

As we plod through the next few months of 5th grade and power through evaluations and testing, this experience gave me so much hope for what he’s going to be able to accomplish in middle school. He may not learn in a typical way, but he can and will learn. That much is for sure.

In preparation for his transition to middle school, the team and we decided that Tate should have his triennial evaluation with the team that knows him, as well as in an environment that isn’t foreign to him. We opened his domain this week. Now we wait…and my anxiety is spiking.

I am a mess as I start to dig deep to prepare for this transition. Yes, I know Jake is doing just fine in his environment. (Although I still worry about the social aspects for him.) However, Tate is a different child, with different needs and the struggle is real.

My greatest worry is that our district really doesn’t have a place for him. Not that he really has ever clearly fit into the slot that is available to him….but even more so now that we are barreling towards middle school, his needs and the way our district structures things don’t seem to mesh.

First of all, we are a 2 middle school district. Our “home” school has an instructional class and resource. Tate will likely not fit into either of those classes. The other middle school, waaaayyyyy across town has an instructional class that is cross-categorical and provides the students with a more targeted, easily accessible curriculum. I’m not sure if they have a life-skill component…but that might be good for him. My struggle is that there is no available information on any programming for next year.

Tate is capable of learning and doing work that is modified to account for his autism. The issue is that he just is not quite able to attend and sit still and ignore peer behavior. It ALL affects him. He hears the buzzing of the flourescent lights and cannot focus. He sees his friend flipping a pencil and he becomes entranced by the rhythm. Peers, who find work difficult, know that Tate will react and get off topic with just the utterance of a word. So they say, “Fart”quietly to Tate, and Tate is off and running with a script, a giggle, and off topic talk.

I see the math that my older son is doing in his instructional math class in 7th grade. I know what he did as a 6th grader in that class. Tate is so far behind even that material. There are too many problems on a page for him, too. He requires a lot more individualized instruction. The 15 or so kids in Jake’s math class would be too much for Tate. He does better in a smaller class size.

His hormones are starting to rev up. Whereas his older brother is more delayed in the onset of puberty and such, Tate is right on schedule. He is girl crazy, and his body is definitely maturing on schedule. When a cute girl about his age acknowledges him, he isn’t sure how to handle this, so he gets flustered and starts shouting his version of swear words. We are working on this in therapy, but it is slow coming. I worry that in a self-contained environment, we are just prolonging this process…but I also can’t see how he’s going to function well in a more fully-integrated environment, either.

I put a lot of value into public schools and their programming. In general, our district has done a lot of good for him. However, I have a nagging feeling that we should also be checking out some other options for next year. Outside placement, perhaps. If he’s in district, do they have sensory rooms somewhere for him?

I read about other children on the spectrum who are fully integrated in the classrooms. They are writing paragraphs, they are answering multi-step problems, they are able to stay on task without constant prompting. Maybe Tate isn’t designed for a traditional school setting, or even a more traditional instructional setting.

Being a parent is about always wondering what else can be done to get one’s child where he needs to be. *sigh* Tate does so well in a highly structured, one-to-one setting where he is task-based and can literally check off his tasks to earn his break/reward/etc. Traditional school is not set up that way.

This morning as I was chugging along on the treadmill, I decided to scroll through Facebook to entertain myself. The impending change in weather made it onto a few of my friends’ pages. (Mine, included.) There were posts about Lady Gaga, posts about Leonardo DiCaprio, posts about Chris Rock and the Girl Scout cookies, and posts about John Oliver discussing Trump. #MakeDonaldDrumpfAgain (That’s as political as I intend to get here.)

I noticed that a friend of mine had posted something on her page about autism and “gut” bacteria. I debated just letting it go, but I decided to read it. It was an almost two-year-old article about the link between autistic behaviors and “gut” issues. I read it. It’s information that has been churned out several times. I don’t disregard that many autistics have issues with their GI tracts and such. I have seen that. I’ve experienced that. But the headline of this particular article baited readers into thinking that “gut” imbalance CAUSES autism and a “simple” daily probiotic would make challenges disappear…. Pffffftttttt.

I did respond, saying that while there may be some correlation, autism is neurological in nature, and really is the way the brain works. I noticed that someone had posted about the fact that “wouldn’t it be great to do a combination of behavior therapy and probiotic to help autism, which proves it isn’t caused by vaccines and is a “birth” defect.” I knew what the person probably meant, but, I took a little umbrage to the use of the word, “defect”.

Now, my son has challenges. He has deficits as compared with like-age peers in terms of comprehension, language, processing, etc…but “defective”? I can’t buy into that. When I looked up the word “defect” in the dictionary, it stated, “a shortcoming, fault, imperfection”. Aren’t we all a little defective, then? I mean, really.

I then looked up the word “disorder”. When applied in a medical sense, it was listed as, “a disruption of normal physical or mental function”. Well, we all know “normal” is just a setting on a dryer. Does my son follow neurological development of other children his age?! Hells no–so yeah, I guess disorder applies. Further down, I saw a definition of “disorder” as a verb listed as “disrupt the systematic functioning or neat arrangement of”. I chuckled at that definition, especially when I consider how routine-dependent my son can be. And have you seen the way he lines up his Paw Patrol guys?!

We also refer to autism as a disability. Sooo, I went to look up the word “disability”. Dictionary.com says, “Adisadvantageordeficiency,especiallyaphysicalormentalimpairment,thatpreventsorrestrictsnormalachievement.” (emphasis is my own) My son approaches the world from a different angle than most. I wouldn’t say he’s wrong. Just, well, different. As long as he has success and happiness and support..well, I think the kid’s gonna be all right. I will concede that it may take him longer to arrive, but he’s going to get to the finish line. He will.

I guess what I’m getting at is, if that person says, “potato”, I say “potahtoh”. She says “defect”, I say, “Unique vision and approach to the world.” And let’s just leave it at that….

Yesterday Tate found a Youtube video of flushing toilets. It’s one of his favorite pasttimes…watching toilets flush. Thankfully, with the wonder that is Youtube, he can watch toilets flush for hours without raising our water bill by hundreds!

Occasionally when he pulls up a video, I censor it due to language. He is often respectful of our decisions and follows our rules. Sometimes, he happens upon a video that I don’t want him to watch because I don’t want him to get any ideas. Like, oh, flushing random stuff down our toilet to see if it is a successful flush or not. Those Youtube yoohoos aren’t going to have to pay our plumbing bills and replace flooring and ceilings if something goes horribly wrong. So, while it’s a nice distraction for Tate, it does require some vigilance on our part.

Yesterday on the way home from school, he found a new toilet video. In the video, some teenagers (I know because I can tell from their voices and word choice.) were trying to flush a snake down the toilet. A.LIVE.SNAKE. I told Tate that he shouldn’t watch it. Too late. The image of a snake going partially down the drain, only to slither its way up out of the drain and out of the toilet onto the floor stuck with him. And me.

During his 2 hour ABA session yesterday, Tate went up to the bathroom no less than 6 times. He wasn’t even drinking water or anything. He just had that compulsion to make sure that no snakes were slithering out of our toilet. As the night went on, he would periodically announce that he had to use the bathroom…and really was just checking on the toilet for snakes. I did a mini-social story for him about how snakes are not in our toilet. We don’t have snakes. We will never have snakes. And we will never EVER flush snakes in a toilet.

He seemed to calm down, and was able to enjoy about an hour before bedtime with us without any compulsion to check the toilets. He even fell asleep relatively easily.

At 11:04 last night I heard him shuffling around the bathroom. Then I heard a flush. Mom-dar went on, and I flew out of bed. I asked Tate what he was doing. He grabbed a tissue and said he was blowing his nose. I told him I heard the toilet flush. He looked at me with big, round eyes. “Mommy, no snakes.” I assured him that there were no snakes. With that, he climbed into bed with us.

It took him a bit to settle down. About 10 minutes into his settling routine, he sat bolt-upright in bed. “Mommy!” “Yes, Tate?” “I’m scared of the snakes!” “Tate, there are no snakes. You are in bed with Mommy and Daddy, and you are super safe. We don’t have any snakes. I don’t like them either. We will never have snakes in our house, if I can help it. Please go to sleep.” He meekly uttered, “Okay.”

He started to go through his routine again. As he was patting my head gently, he dozed off to sleep. I wasn’t far behind him, but just enough that I marveled at our progress. He could tell me what was wrong. I was able to keep my calm enough to help him calm down to sleep and give him the assurance that he needed.

So, even though we have the hard places, I can find the hope…and the light. We both slept well until 6 this morning. I will chalk that up as a win for us.

I know I also haven’t written as much lately because, well, my boys are getting older, and I just don’t know how much I should share. I hear this sentiment echoed often through the blogosphere…I do hope that my boys know how much I love them and how much my writing is a catharsis for me.

I decided to write today because I am struggling to process through the events of this morning, and I just need to work out MY feelings.

Our school always does a breakfast for veterans. It is well done, and teaches the students about sacrifices that our veterans have made for our country. The third graders are responsible for putting together the event. Well, the teachers and a few of the third grade parents plan it. The kids make crafts and invite veterans and sit with the veterans during breakfast. The rest of us moms and dads volunteer and serve the veterans and kids, and help them in their endeavors.

We had prepped Tate for today. I did a little social story. His teacher sent home the songs that would be sung. I showed him pictures from the Veterans’ Breakfast that Jake’s class put on a couple years ago. He knew that I would be there helping out, and that my dad, Grandpa, would be there, too.

Tate started out just fine. He sat with his Grandpa and with some other students from the class that he pushes into. Then he started to look for me. I was out directing guests to the right location. One of the aides came to get me so that Tate could say hi to me. We walked in, and Tate ran up and gave me the biggest hug and hugest smile. We talked about how I was going to help, and how he had to go sit with Grandpa. He went back and sat with my dad.

At first, everything was just fine. The veterans mingled with the children. We parents walked around, offering refills of juice, coffee, water, and fruit and pastries. Tate happily sat by my dad and talked to him. He started to stim with a spoon. He came up to find me. I assured him that all was well, even though I could hear the voices getting louder, and the commotion started to increase.

Tate sat beautifully through a VFW representative’s speech. He kept stimming, but he was seated. Then, people started to move around. Parent volunteers started to roam the aisles to get pictures of their kids with their invited veterans, or pictures of them with their child. Tate is in a no picture phase, so I knew that when I asked he would politely turn me down. “No thanks, Mommy.” I snuck in a few but they weren’t the greatest quality.

The noise in the gym started to increase. The screech of the chairs. The talking over one another. Peals of laughter. Shrieks of delight. Little by little the noise increased as the time dragged on. It started getting warmer in the gym, too. Some adults took off their sweaters or their vests. Some removed jackets. The third graders were starting to roam around and find their friends.

During this time Tate got up and posed for a picture with some of his classmates. He really struggled to do it, because, like I said, he is in a no picture phase. But his beloved girl classmates were asking him to join them, so he did. Then they were starting to get silly and do girly things. It was clear that Tate was no longer a part of their interaction. I asked Tate to sit down. He did, begrudgingly. He wanted to be with his girls.

One of the girls told him he couldn’t sit by them, because he isn’t in that classroom. He got flustered. He really struggles when it comes to handling his emotions of disappointment or embarrassment. He was so disappointed. He threw a spoon in her general direction. When I asked him to calm down, he said, “sorry, mommy”. I tried to explain that the girls were with their class, and wanted to be together..and that he could come talk to the boys. He didn’t want any of that.

Then, well, one of his beloved girls came back to him and asked why he was yelling at his mom. He lost it. He pawed at her. I pulled him aside and asked him to calm down. He laid on the floor. One of his aides came by and we got him into the hall, the hallway where it should have been quiet, but unfortunately, the 2nd grade was getting their coats to go outside for gym class. He wasn’t getting his quiet escape, so he asked to go back in the gym.

As we entered the gym, the girls came by him again. This time, he hit at his beloved girl a little harder. I was gobsmacked. I reacted, maybe not as I should have, but I told him he needed to calm down and keep his hands to himself. I directed him to his seat. I forced him to sit down. He started to call me stupid. Then he threw another utensil in his beloved girl’s direction. One of the regular ed teachers tried to step in and reprimanded him. That did no good. He started to fake wail. He was losing his shtuff.

His teacher came to the rescue. As he was whining out of frustration, she walked up calmly and asked if he’d like to go do a break in the classroom. He said no. He stood up and called his beloved girl stupid again. Tate’s teacher knew he didn’t mean it…she knew that he was just frustrated…and embarrassed…and overloaded. So she told him that he had a choice. He could do a break in her classroom or go get a drink of water so he could calm down. He chose the classroom, and they were off.

As they exited the gym, the third graders lined up to sing their songs for the veterans. Tate SHOULD have been there. THe singing is his favorite part. He LOVES music. He’d been practicing all month. But it wasn’t meant to be. He was content to be in the quiet classroom where he could bounce on the trampoline for a few and not have all the overwhelming noise and commotion.

As Tate found his calm in the classroom, my heart broke. It’s not fair. Something as “simple” as an hour-long breakfast with other third graders and veterans was just too much. I wanted to cry. I wanted to scream. Instead, I watched other children sing and sway and pledge their allegiance to the flag. My dad watched other people’s grandkids belt out “The Star Spangled Banner” and “America the Beautiful”.

In those moments, I wondered, are the gaps getting too big? Is Tate being properly served by being in a general school setting at various times during the day? The other children his age are maturing at a faster rate. They are able to do so much more independently. They are able to perform songs as complicated as “The Star Spangled Banner” and can last an hour in a large group of people. Tate tried. He gave it his all. But in the end, it was too much. And is this gap fair to him?

And I find myself back in the hard place…wondering if we are doing the right thing. Wondering if we are keeping him in a general school setting because it’s more comfortable for us…is it what’s best for him?

The past few weeks have been a whirlwind. The boys started school. Hubz left for another business trip to China. My PTO involvements are starting to ramp up. And we opened Tate’s domain last week because he is eligible for his 3-year evaluation.

As for school, it was a relatively smooth start, considering all of the changes and upheaval. There was a new main office to walk through and new therapist offices to familiarize themselves with. Tate’s teacher is on maternity leave. He’s pushing into the mainstream classroom for morning announcements and the pledge. Jake is in 5th grade–his last year of elementary school. He has a new resource teacher for part of his classwork. Cole is attending full day kindergarten, and he’s EXHAUSTED at the end of the day…but you know what? We prepped them well. After initial anxiety all three boys are settling into a routine.

Our district also adopted new math and literacy curricula this year in order to align with the Common Core more directly. That could be an entire post in and of itself. Maybe one day when I have more time. Let’s just say I’m not sold.

Hubz left for China the day after Labor Day. I handled the Curriculum Nights and the first go-rounds with homework without his backup. Let’s just say there was shouting and some tears…and they were all mine. My poor boys. My anxiety is apparent, and I try not to take it out on them, but you know, I can only do so much. We’re getting through it, but man, it’s tough. I really do not know how single parents do this every.single.day. They have my utmost admiration. They really do.

I somehow volunteered to co-chair our school’s walk-a-thon. It’s one of our biggest fund-raisers. So I’d better not muck it up! I took it on thinking that we’d found volunteers for the Red Ribbon Week initiative that I had been co-chairing, but no, it was a new parent who wanted to “shadow” someone. Sooooo, I’m still running that. Of course both are in October, so in addition to everything else, I’m planning these events. I guess I don’t have to worry about what to do with my “free” time these days.

And, finally, Tate is up for his 3 year evaluation. So much emotion and anxiety go with that. I know he’s on his own trajectory, and I’M okay with that..but it doesn’t mean that the district is. Ya know?? I about threw up when I heard during Cole’s kindergarten curriculum night that they now expect kindergarteners (5 and 6 year olds, that is) to be reading at a level D in Fountas and Pinnell guided reading by the end of the year. Tate, a third grader, is just past that. *sigh* I try not to let that get to me..but dammit, it does.

I dutifully filled out my BASC-2 rating scales and background history–again–and now, I wait. I know the teachers have to do their part. Luckily they are doing a full-re-evaluation. I know that he will show how much he’s developed and progressed. He’s come such a long way since 2011. And yet, for all of that, I know he’s not at an expected level. And that has its own set of concerns.

I had my parent interview yesterday with the social worker. She wanted to know my concerns. Ummmm, where to start. Tate is deliciously quirky and marches to the beat of his own drum. He’s reaching that awkward time in school where more and more of his peers note his differences. They see him expressing excitement and anxiety with flapping hands or a little stomp dance. They hear his echolalia and his scripts. To them, they don’t have anything to do with the current topic or situation. To Tate, and to those of us who know Tate, well, we know they have EVERYTHING to do with the way Tate processes the world. Sadly, some kids aren’t always so empathetic (funny, right, we talk about how autistic kids lack empathy or theory of mind, but really, I think it’s an individual thing, not an autistic thing). He’s an easy target for bullying. I have already heard him cry because he knew his peers (his instructional classroom peers!) were laughing at him.

There’s the concern that we aren’t doing enough. That we’re doing too much. That we aren’t letting him gain independence. That we’re expecting way too much from him. Is he in the right placement? Should he be in a specialized program? Should we let him have exposure to “typical” peers…whatever that may be? That balance…oh, therein lies the rub.

I’m concerned. Oh, I’m concerned….but, I also know that we have to make choices…and then we fine-tune. If something isn’t working, we just adjust. We accommodate. We modify. We work.

So, that’s our life, in a nutshell, right now. We work. We worry. We prep. We adjust. Lather. Rinse. Repeat.